Monday, jab Monday so I take my time getting up. I check my messaging and cyber litter and then I take a long shower. A brief breakfast and I am as ready as I am going to be to take the walk to the GP surgery. I take my time walking down and check in with my jab tucked under my arm. I get called in quite quickly and I soon have a months worth of meds pumped into me. I walk home slowly picking up a paper on the way.

Once home I sit and do the days crosswords and then write letters. I pop across to the post office and post my letters and then return home to take a rest. My injection is becoming sore and so I take a time out, down some more paracetamol and try to rest. My partner finishes work and she joins me resting, which means we can have a chat and catch up, there is a lot going on. We decide to treat ourselves to take away and do the ordering while we wait for Tesco to deliver. Its a double bill of Silent Witness tonight which we watch while tucking into Indian and then squirreling the Tesco delivery away. Its an early night tonight, I down my meds and extra paracetamol, hopping for a restful night. Tomorrow is usually a sore day so lets wait and see.

Sunday and a slow start as after breakfast my partner goes to the gym and I putter about. I do very little other than write a letter to a friend, but I cannot get the printer to work, so I have a challenge ahead of me tomorrow. I check my vitals and then carry on with my day doing nothing in particular till the evening rolls around and I share a meal with the family and watch TV in the evening. Of course this is all about reaching the evening, doing the Tesco order and then preparing for tomorrow, for tomorrow is jab Monday. That means not only taking my chemo but taking the prophylactic paracetamol to stave off the jabs side effects. I know that the jab gives me a couple of tricky days so I think my Sunday has been deliberately quiet to prepare. So one of those apparently mundane days that has the under current of cancer running through it. Tomorrow will see how well I manage the walk to the GP as it was the walk round the village that induced the last bout of blood in my urine so I am understandably cautious.

Saturday and I wake up feeling a bit better. My partner and I have breakfast before she goes off to have her feet pampered. For my part I do chores and take my vitals, good again. By the time I’ve got my washing in my partner has returned and we go for hot chocolate at our local garden centre. My partner and I chat about how I am and the possibilities of seeking a second opinion about my cancer. In our conversation I noted that the message from the medics is that they have no cure and that it is all about palliative care, it feels like hope is torn away all the time. We return home and I settle down to watch the rugby matches and sort my washing.

Its a quiet evening of more rugby, food and a really violet film before I take my night meds and I take myself to bed. Its been a slow day as I try to build my confidence up again. At some point I need to decide to get back on the rower, but in the meantime I need to look after myself.

Friday, normally a day of celebration having reached the end of the week but today I am drained before I start. I got up in the night plagued my thoughts that I am being scammed by the people/ company supposedly producing my book. At 3 o’clock in the morning I got up and checked all the correspondence, emails and messages. I also checked out the web to see if I could find them. I did find them and as usual there were mixed reviews although overall Trust Pilot gave them a reasonable rating but as we all know ratings can be manipulated. I checked my Amazon KDP account and reconfirmed that authorisation codes should not be shared. I also checked all my bank accounts to ensure hey were all in tact and there was nothing unusual on them. In the end I sent an email to the “American team”, stating where we are and requesting details of what they are doing and exactly what what is supposed to happen next. There is either a book or there isn’t, if there isn’t I will cut and run and put it down to experience. I suppose the lesson in this is that vanity makes me vulnerable to being conned, shame really because I was genuinely excited about the prospects of a book being on the Amazon platform. So this Friday is a bit more “Glum” than usual, not to mention the fatigue. I did return to bed and slept a little better feeling I had done something. What with yesterdays scan my spoon reserve for today is low.

When I woke this morning I went through my cyber litter, check messages and my news feed. My partner brought my now normal hot water before I checked my vitals. As ever these were good enough. I get up and have a light breakfast and putter for a bit but basically I am just marking time and trying to collect myself. There should be drugs to collect as Monday is Jab Monday, I could do with training and a shower before going to to see Sister Act tonight but I suspect I will need an afternoon nap to get me going properly.

How the world changes. I realise that the chemist in the village closes for an hour at lunchtime, yep its that kind of village. So I settle down to write a letter to a friend on the laptop. It takes me about an hour after which I make my way to the post box and then onto the village centre to the chemists. I am surprised to be the only person in the shop as usually there is a queue of folk collecting end of week prescriptions. Clutching my drugs I go to the village shop in search of a paper and bread. I add flowers for my partner and walk home against the wind. Once home I put the flowers in a vase and put them in the office for my partner to have, then I feed myself soup and do the crosswords, all is good. I’m thinking about tonight and going out when I go to the toilet and find I am pissing blood. That short walk has induced this. I am gutted. I tell my partner and we agree that she should still go to the show and take my eldest daughter with her. There are calls made and ultimately my partner and eldest daughter will go with my brother in law and niece. I shall be staying home with my feet up. I take paracetamol and down a pint of water.

I am initially distressed but grit my teeth and accept that I need to rest and hydrate. The paracetamol is just to dull the pain of passing blood, after all I’m living proof that blood is thicker than water. While I sit with my feet up I check my emails and arrange for the builder to visit to talk more about the work on the drive and the patio. I also read carefully the response to my email to the book people I sent at 3am last night. The response is detailed and mildly reassuring, I suggest they send the digital proofs and that we talk again on Monday as I am currently ill. With that out of the way I return to the blog and update it. So I wont be going out tonight, I shall feed myself and watch rugby while drinking copious amounts of water. The ultimate aim is an early night and a nights sleep. As I said how the world changes, this is how cancer intrudes on the mundane. It is remorseless and persistent, as I and Rocket are.

It February! Its a Thursday and it a bone scan day. These are the days of high arithmetic and spoon use. I wake and do my cyber litter checks, still nothing from the American book people, I think I’ve been taken for a ride. I book a Tesco slot and fill a basket and then do my vitals, (once again good). So I get up and cook breakfast and then search out a conference paper I read to send onto a friend who I saw on Linkedin selling her company.

Suddenly its almost noon and I need to be at the hospital for 1 o’clock. A speedy shower and a quick dress into clothes with no metal in them and I am almost ready to go. I remove all my jewellery, grab a book for my backpack and I am off.

The hospital has a good car park which is a blessing and runs a number plate recognition payment method. Thinking ahead I take a photo of the number plate and then march off to the Nuclear Medicine department where a receptionist handed me a COVID sifting form to fill in. I settled down in the waiting area to be called along side two blokes who where together, The guy for the scan was very anxious and on the spectrum, his friend was also somewhere on the spectrum. The friend tried to be helpful but only wound his friend up and forgot things, so there was quite a lot of chaos going on behaviourally and emotionally. I looked at them and wondered how they were ever going to mange to get the guy to be still enough to scan him, the levels of agitation were very high. I get called in to have my cannula put in and then the radioactive marker. It goes very smoothly and I am sent away to return at 3:30pm. Before I go I make the nurse aware that the guys who are waiting are likely to be tricky because of their anxiety and state, she thanked me for the heads up and noted wasn’t the first to mention it.

I drive home for lunch and time to do todays cross words. At 3 o’clock I am back on the road back to the hospital. As I enter the Nuclear Medicine department I see the nurse who acknowledges my return and tells me to empty my bladder, which I duly do. I am whisked into the scan room adn asked to lay on the scan bench. I was expecting a pillow under my head and one under my knees as usual, but it was not to be. Once flat I get a surprise, I am told to put my arms by my sides and then I get swaddled. Retaining flaps are velcro’d over me so that I am like the meat in a sausage! I opt for my only realistic option in this state, I breathe deeply and let myself drift off to sleep, a sort of guided nap. Some 40 minutes later I am released and told I can go, which I do. On the way out I see my original cannula nurse and I ask how they got on with the guy. She just said !It never happened” and left it at that. How on earth the referring doctor thought that the guy would ever be able to tolerate a scan I cannot fathom.

I get home and sloth into the evening rapidly running out of spoons and eat tea and start to draft the blog. I feel myself getting restless, a sure sign that I am sinking into fatigue. I sink over the evening failing to maintain interest in either of the two football matches on TV and sink to the Madame Blanc mysteries. Nothing for it but to get my night meds into me and go to bed to gather up some energy. Tomorrow is a treat out to see Sister Act.

Wednesday and I wake early, watch a Mock the Week compilation of “Scenes we would like to see”. It amuses me to be amused first thing in the morning. I do my cyber checks and then measure my vitals before finally dragging myself out of bed for a toast breakfast.

This is not just another Wednesday, this is the start of cycle 9 Wednesday. Its the cycle that will include an oncology review and the decision as to whether or not I go on getting the chemo. As my arithmetic is good, my bloods good, my vitals good, in particular my blood pressure, I am expecting that “he who made a pact with the devil” will sign me up for another 3 cycles. This would take me to May/June time. The only fly in the ointment is how my bone scan goes tomorrow. No way of knowing how that will turn out, its just a case of keeping my fingers crossed and hoping for the best. So today I will check the car before going to the hospital tomorrow, trying to train and having a healthy day.

I find my way to the Shed and settle in and organise my new wax cauldron for sealing my letters. I light my candles and set the heater to on. My dipping pens and ink wells are clogged so I return to using an old style fountain pen. As the morning goes on I write letters of increasing unpredictability. I keep writing till mid afternoon when I stop for soup, but not before I see a short video of my new grandson eating solids for the first time. Carrots, the dish of choice, which he appears to have enjoyed. I have a bout of not feeling well and checked my vitals. Everything is good except my heart rate which is elevated so I have a burst of meditation music and give myself twenty minutes to recover. What this tells me is that it is most likely to be anxiety that has caused the rise. After a bit of a rest I go to the post office and post my letters, buy a paper and a bag of M&M peanuts to boost my blood sugar. Once home I get to work on the crosswords and get through them in good time. I am watching the COVID enquiry when my partner returns from seeing her mother.

The evening arrives, there is nothing from the Americans about my book, so I start to draft the blog and check the arrangements for tomorrows scan. Its one of those where they pump me full of radioactive stuff then send me away for a couple of hours before I return to be scanned. I guess it will be okay, I’ve done them before so I’m hoping my experience will take me through. I am also waiting to hear from our builder who is going to do work on the back and front gardens. But builders tend to get distracted, so I guess I will need to nudge him. I shall take this evening slowly and aim for an early night to build up my store of energy spoons. My day has not turned out how I thought but adaption and creativity has got me through.

Tuesday and I wake up as my partner goes to work, so I go through my cyber morning routine, where I find nothing of import or interest really. I send a couple of WhatsApp messages and then get dressed having decided to go for breakfast in the village café. I walk down and buy a paper before going to the café and ordering their breakfast, the two of everything variety, and a hot chocolate. The breakfast is delicious and satisfying. The cross word goes okay but I alter over two clues. I become aware that I need a toilet and as our village café does not have one so I head home. Half way through the journey I realise I was searching for the word “stench” for “smell”, which then unlocked the European country I was searching for, “Hungry”. I must have cut an odd figure as I stood still on the pavement and filed in the clues there and then in case I forgot my revelations.

Once home and comfortable I do the other crossword and settle down to do the odd chore. My body is not comfortable and I find I think I have blood in my urine again. I take time out to have a rest and listen to some meditation sounds via Alexa. So I spend an uncomfortable day getting more and more irritated with myself. In the end I get myself up into the loft and find the painting my partner remembered from our trip to Paris in 2003ish. Its a small but rather lovely as it has caught the light well.

I take more time out to rest and drink water before starting to draft the blog. But now I prepare to talk to the Americans about my book publication. That will be fun holding them off till I see the “product”.

The bastards cancelled as their “publishing expert had to deal with an emergency and cannot be in the office today”. So its out off till tomorrow or the day after. I feel like this is a run around and I am tempted to just walk away. I will give it to the end of the week and then reassess where I am with this. So tonight I seethe a bit, take paracetamol to dampen my discomfort and look forward to an evening of mixed football and a double bill Silent Witness. I am not amused, neither am I patient nor content. In fact spikey and pissed off is where I am, although I did remember to order my next lot of drugs including Mondays injection. No end to the fun. I might just retrieve my humour with an alcohol free rum and coke and a poem about my transatlantic relationship, which could well include the the phrase “fuck ’em”, a lot. It will all end in night meds and bed with the hope that tomorrow is better.

Monday and the week starts with me booking my next monthly jab for next Monday. I run through my getting up routine before showering and having breakfast. I am not inspired to do much as I feel I am lacking energy. No sign of my book being published yet. I decide to run off all the tickets for the up coming shows we have booked and organise them into a folder for safe keeping. A friend has a birth day tomorrow so I organise flowers then I decide to read for the rest of the day. So with herb tea and cheese sandwiches I settle down on the sofa to re read The Hitchhikers Guide to the Galaxy. That is what I do for the remainder of the daylight hours. I relive Don’t Panic, Marvin the Paranoid android, The Infinite Improbability Drive, The Answer of Life, the Universe and Everything being 42 and the earth created and run my mice. Its a thoroughly good read. I finish it just as my partners friend arrives, who will be staying the night.

My partner goes out for a meal with her friend to be followed by my eldest daughter going off to circus skills school leaving me to await the Tesco delivery. Its a bit of a bastard really as the inaugural meeting of the village heritage group’s family history meeting in the library is at 7pm just when Tesco will be delivering. I start to draft the blog before fixing a meal and settling down to watch a football match. The aim is an early night, after night meds and a read. Tesco deliver, I watch football and go to bed spoonless and apparently forget to post this.

Sunday and I am brought hot water as I wake up. I weigh myself as my first Sunday task. I come in at 99.7 kilos, a slight decrease from last week. Hopefully this will continue by small increments of the weeks to come. Before getting my day going I take my vitals and then get into my training kit. The plan is to go to the gym to both get out and to train differently. While my partner prepares the evening crockpot I cast up my vitals data from the last few days. It appears the arithmetic of the vitals is on course to be average again. After a short interlude, we drive to the gym.

On arrival we have to produce our gym numbers as the entry system has gone down. The gym lounge was full, the pool was full and there was a spin class going on. I go to the changing room to look for a locker. The changing room is packed, even the lockers without padlocks on have clothes stuffed in them, I begin to try and get organised and suddenly realise I cannot do this. I grab my jacket and retreat to the lounge, there are no sofas left just hard chairs and small tables, one of which I grab along with a hot chocolate from the bar. Hot chocolate is one of my go to calmers. I caste around for a distraction and write some lines about how I am on my phone and then try to find a way to keep them. Out of lines I watch football on my phone with my ear buds in. I manage to avoid the stuff around me.

I can’t do this,
I’ve panicked.
I got into the changing room
And things changed.
So many people,
No privacy,
I can’t face this.
I retreat, 
To the lounge.
Is this how I am now?
Scared to share
A space,
The sight of my body,
The length of my hair,
My reduced state.
Hot chocolate 
Ordered and runaway with.
I tip tap on my phone,
Hoping the Dementors leave.
I sip at my cup, hopefully.
I wait for my partner
To rescue me.
The gym, once a haven
Is now a bear pit of vulnerability,
The teeth and
Claws of death everywhere.
Another toke of chocolate
Another line,
Perhaps this is how I survive.
Out here requires energy,
And I am spoonless.
I feel stupid,
Weak and a freak,
Most of all I am alone,
In the worst possible place.
The voice inside says
“self pitying bastard”
And I cringe from self.
No amount of arithmetic
And vitals being right 
Makes it go away. 
I smile as I realise
I do not know how to keep this.
No idea how I can end this,
I’m scared.

									366 28-01-2024
									David Lloyd Gym.
   

My partner arrives from her session and takes me home. I try to down load my words from the gym, which I manage eventually. I settle down to watch football, which I go on doing through to the evening, the evening meal, and then finally through to Call the Midwife. I draft the blog. This mornings gym experience has thrown me. I never thought I could get this skittish or self conscious. Of course I need to regroup and pick other times to go to the gym, but I need to pay attention to this as a warning of how I it can be. It clearly takes me more energy and structure to keep myself function as I wish to. This is food for thought. In the meantime there is a night to get on with, meds to take and tomorrow to plan for, like a Tesco order, booking my next 28 day jab and preparing for our over night Monday guest. Its been an unsalutary day.

Saturday and I wake up slightly later due to my late night last waiting for my blood results. I am still stunned by the fact that they were all in the green zone. Not a single test was out of the normal range and my PSA has edge down again. I’ve checked back and I’ve never had an all green set of results before so I make no apology for putting them up here once again.

My partner brings me a hot water and we chat about the results and how I am. I check to see if my book has actually arrived on Amazon, but it hasn’t and I doubt it will between now and Monday at least. We decide to go for breakfast at one of our favourite garden centres.

Strangely the garden centre is devoid of plants but the restaurant is open. Our tables next to a family group who have come out early for a Prosecco breakfast. I opt for eggs royal and a berry tea. My partner and I have more time to chat and review where we are. I am afraid I am becoming boring about the book but just want to get it done and see the real thing in my hand, until then it does not seem real. Once it becomes real, if it does, then I can push the go button on at least another two or three collections. My partner also has irons in the fire that will effect our future and we chat that through as well. We leave the garden centre and drive to another where we can buy fresh meat and vegetables. Its been a successful morning so on the way home we drop into yet another garden centre café for hot chocolate and toasted tea cakes. More chat and planning time. So after a prolonged jaunt I drive us home where I settle down into one of my regular Saturday tasks, namely filling my drugs wallets for the next two weeks.

I get into an afternoon of rugby until my eldest daughter has a problem with the printer. It means firing up the main PC and doing checks on the printer and seeing what is going on. It takes a while to run through the possibilities it eventually I track it down to a faulty cartridge. I pop a new one in and bingo the printer returns to working order. In test printing a document I use the first document in a folder called “blog”. It is dated 1st January 2020, which is just a few days before I finished the cycle of my first bout of chemo therapy. I read it and realise how difficult that time was and how lucky I am to be here four years on. The issues of survival are the same but now they are more nuanced and subtle, a different kind of grind, it is shift from the hope of cure to containment, palliative care and the struggle for the best possible for as long as possible. I add my four year old blog as a reminder to all of where I was four years ago.

So this is a new year.2020, the roaring 20s is what everyone seems to be calling them. I wonder where they get such fanciful ideas. I woke up feeling still 2019 and still with cancer. I’ve not made New Year resolutions but will attempt to make some life style changes. A few diet changes, more fruit, protein and less carbohydrates, certainly no sweets or sugary things. More of the things that give me magnesium like avocados and nuts. Of course I will keep taking my drugs and making sure I get my B12 shots on a regular basis. More exercise is going to be a priority when I can. I need to keep pumping the blood round and making the heart and bones working. I need to combat the weight gain, by exercising on a balanced diet.
 Finally I need to learn patience. I’ve no idea whether or if my nails will grow normally again, I have to wait. I have no idea if my beard will grow back, I just have to wait. I have no idea if my hair will grow back, I just have to wait. I have no idea if I will get my sense of taste back, or lose the metallic taste, I just have to wait. I do not know if I will stop getting cramp in my calves, will just have to wait. I’ve no idea if I will get my strength back, but I can work on that.  I have no idea if I will completely lose the numbness in my fingers, I will just have to wait. I have no idea how my body will continue to respond to being stripped of testosterone, I will just have to wait. I have no idea if I will get to be able to sleep for more than three hours before needing to empty my bladder, I will just have to wait. All this and I have not yet reached the end of cycle 6, I’ve still got another 5 days to go before I have come to the end of the chemotherapy. I have no idea how long the cumulative effects of being poisoned since the 3rd of September 2019 will last. All I can do is wait. I’ve no idea if how I feel about being a sexless fat semi male is going to change or whether I will continue to avoid mirrors, dislike the feel of my own body and think I smell of chemotherapy. All I can do is work when I can, be scanned when I am told to, give blood samples when I’m told to, attend oncology appointments when I am summoned and pretend that it’s possible to live a life with some sort of meaning, efficacy, and contribution to make. It becomes an “as if” life. I shall live “as if” it is all possible while knowing that I live on an island with the sea of the real world lapping or storming around me. The direction is to keep putting things in order for the family, doing the right things, staying focussed and under no circumstances buckle. So here I come into 2020, waiting, learning patience and waging my own internal war.
As for the practical things of the day. I did my claws, visited my partner’s brother to deliver his CP invitation and cooked a curry. We also ordered food to be delivered tomorrow at 8:30. Tonight I watch football, write the blog and plan my day as my partner returns to work tomorrow. So tomorrow I fix the direction and focus on the life in hand.”

Its been a grind and here I am in my second bout of chemo, a different kind of chemo that is less toxic but more insidious and not time limited. It will go on being given to me as long my body will tolerate it. As I say it’s side effects are more subtle and has me juggling my energy spoons each day. I think on balance my “as if life” has more made me change my expectations of what I can possibly achieve.

I go into the evening hoping for a smooth run through to an early night and a good nights sleep. I need to renew some of my “2020 vows” to learn patience and to keep to the things that got me this far. The difference is the lack of energy and the greater level of invasion that the cancer has made into me over the last four years. It is all a question of how effectively I can adapt and be creative. So onward to tonight’s chemo, sleep, time to come and, under no circumstances buckling.